The Rare Disease Podcast 4 Medics has launched! Each week we will bring you interviews with people from across the rare disease and medical world. We will be looking at different experiences and perspectives while providing pragmatic tips and advice for healthcare professionals.
Make sure you listen, subscribe, download, rate and share now on Apple Podcast and Spotify!
Interviews with patients, clinicians, advocates, students, researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics4RareDiseases who are asking medical professionals to #daretothinkrare in order to improve diagnosis, clinical care and research in this neglected but really important field of medicine. 350 million people in the UK live with a rare disease so while each disease is individually rare, together rare diseases are common.
Tune in now to listen to the following available episodes…
Episode 0: An Introduction to the Rare Disease Podcast 4 Medics
Lucy provides some background into the world of rare disease and some info one what you can expect from this podcast series.
Episode 1: Not your usual heart attack
Exploring how people with classic heart attack symptoms are not being recognised as having heart attacks because they don’t meet the usual patient profile. Lucy was joined by representatives from BeatSCAD, Karen and Sarah, plus Dr Adlam, Consultant Cardiologist to raise awareness of spontaneous coronary artery dissection (SCAD) and discuss how the unmet needs in this one condition are reflective of many in the rare disease community.
Episode 2: The Student Voice Prize 2021
The Student Voice Prize is an annual, international essay competition that raises the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across considering rare disease as one field during their training.
In this episode Lucy and Philippa from Findacure talk to one of last year’s winners – Caitlyn Taylor, 5th year medical student at The University of Edinburgh. We discuss why she entered, her essay and a recent remake of a Rembrandt painting she posed for…
Episode 3: Doctors are patients too
When Dr Genevieve noticed some problems with her grip and speech she put it down to stress. GP is a high pressured environment and like many doctors, she had a tendency to not worry too much about her own health. She was the first in her family to be diagnosed with myotonic dystrophy, a rare genetic condition, but she wasn’t the last.
In this interview Dr Genevieve talks about her diagnosis and how it has impacted her as a patient and as a doctor. She has learned a lot and we can all learn a lot from her.
This interview was recorded to mark the first ever International Myotonic Dystrophy Awareness Day. Learn more here.
Episode 4: Growing up with an undiagnosed condition
Sarah Lippett spent eleven years suffering with symptoms from an unknown condition. She was diagnosed with the rare disease, Moyamoya, at the age of 17. In November 2019 she published her beautiful graphic memoir ‘A Puff of Smoke’ which tells her story using the power of the sequential narrative. This is a throwback to Lucy’s interview with her ahead of the launch.
Our first season will include 10 interviews. You can look forward to hearing from Dan Jeffries who was born with a rare condition called Wyburn-Mason syndrome that has left him blind in one eye since birth. It was thanks to this condition he was invited to volunteer as a model patient for an Observed Structured Clinical Examination (OSCE) for ophthalmology trainees. Only one trainee correctly identified the aterio-venous malformation in his eye but all six diagnosed him with an entirely new condition…
One last thing
This podcast series is for driving awareness. It is not for formal education or medical consultation purposes. Find out more about the awareness raising efforts of M4RD, including who our commercial sponsors are at www.m4rd.org
M4RD would like to acknowledge and thank the companies who have sponsored the M4RD 2021 workplan: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Freeline, Illumina, PTC Therapeutics, Sarepta Therapeutics and SOBI. All funding received is used for achieving the objects of Medics4RareDiseases. M4RD operates entirely independently from these companies and they have no editorial control over M4RD’s contents or activities.